Is a Spinal Tap Necessary to Diagnose MS?

[ADavid]

My neurologist diagnosed me with MS three weeks ago and just prescribed Tysabri. I have no symptoms, now. Completed the steroid infusion therapy and that eliminated the symptoms that brought me to him (bilateral leg and feet numbness). But, he hasn't done a spinal tap and doesn't seem inclined to.

I thought a spinal tap was necessary to confirm the diagnosis? I'm told the spinal tap is necessary to rule out other diseases, e.g. lymes disease. I'm nervous about starting Tysabri without having the spinal tap first.

Multiple MRI's showed lesions in my brain and spinal column and the doc. is basing his diagnosis on that, plus I performed poorly on the EMG test. I passed the evoked response visual test fine and an examination by an opthamalogist showed no optic neuritis. I'm wondering if maybe I've been misdiagnosed. Should I demand the spinal tap before starting Tysabri?

And yes, I know about PML, I'm negative for the JCV and on no meds so the doc. feels I'm a good candidate for Tysabri, as the first med., and my insurance even approved it as a 1st time therapy. Thoughts?

[Ringer1319]

My Experience

ADavid --

When I was diagnosed.. almost 2 years ago. I was diagnosed by the symptoms, clinical evaluation & MRI.

I started on Avonex immediately.

It wasn't until I had a really bad flare up in October 2010 that my Neuro called for a spinal tap, just to make sure that nothing else was causing my medical issues.

I know a lot of people with the MS diagnosis that have not received the Spinal Tap... however, if you would feel more comfortable starting medication after receiving the spinal tap... I would speak to your neuro about this.

Getting my spinal tap is not something I want to go through again...

What were your symptoms that led you to getting the MS diagnosis? Are you feeling better after receiving the steroids?

[Alpharetta]

Spinal tap is just one test

they take the fluid and count the Oligoclonal bands, basically stop counting at anything above 5. The test is subjective, if you have low or no bands it doesn't mean you do not have MS. It sounds like your MRI's are pretty conclusive for lesions, all this test will do is give some pain, add some risk to your life and potentially add confirmation to the diag. I had one small lesion early on and very few symptoms and had the test done, came back positive for the bands. Unless you are considering dropping your DMD at this point it would probably not be worth it.

[lukeduke]

I did not have the spinal tap. My neuro said based on my first MRI that it was obvious I had MS. He said that there was evidence of past attacks. Based on my first MRI he also said that I have "black holes" in my brain.

[winded_tolerance]

My Neuro ordered it when I was admitted initially to confirm the suspected Dx. It was a way to make sure it was a correct Dx for them..

[JerryD]

I didn't have a spinal tap (LP). I was diagnosed by MRI, EMG, VER and other tests performed by my neurologist. I consulted (3rd opinion) the MS specialist at the 'big city' university hospital. One of the most important things to do for yourself is to get a consultation with a MS neurologist. You can figure that the local chapter of the MS association will have those names on their lists.
Oh, by the way, I don't think the LP is necessary to diagnose Lyme disease. I think a simple blood test does it. And since we are talking blood tests, what do you know about your vitamin D levels? Its part of the diagnostic process.

[lemstar]

As other posters said, a spinal tap is NOT a conclusive test for MS. I never had one, and there is no doubt from my MRIs that I have MS.

I am curious about starting with Tysabri though....is your neuro an MS specialist? I would be more concerned about that than about an MRI.

[Alicious]

No spinal tap here, either. It can be a valuable piece of information in some cases, but in other cases, the rest of the evidence is enough, especially as stated above it is simply a piece of the picture, and cannot definitively tell you if you have MS or not.

If you aren't familiar with it, google McDonald criteria and it will tell you what data is needed to make a diagnosis of MS under current standardized guidelines.

[KateA2]

I had a LP this past winter and it was negative. It wasn't a bad experience, a bit uncomfortable and sore spot on my back for about a week afterwards/small amount of bruising from the numbing shots.

I am dx'd "probable RRMS" due to multiple attacks with remission over time (TN, TM, vertigo, heat-intolerance, etc.) I only had one spinal lesion visible on my last MRI. Everyone is different it seems~

[Toomnyhats]

I was dx w/o LP based on MRI & hx. Dx confirmed by MS specialist/head of MS Clinic. I was told I could have an LP if I wanted but it wasn't necessary for my dx. I chose to not have it

[CGMoonbeam]

Thankfully, I did NOT have to have one. For once my large size paid off. Neuro said that it would require me to in for the procedure like surgery, and he wasn't willing to put me through that when the MRI told him everything he needed to know for the dx.

[Jules A]

I was dx w/o LP based on MRI & hx. Dx confirmed by MS specialist/head of MS Clinic. I was told I could have an LP if I wanted but it wasn't necessary for my dx. I chose to not have it

This is how it went for me also. The regular neuro ordered one but the MS specialist said it was only needed if I needed more proof.

Since I was nearly blind and had multiple lesions on my brain I figured it was a safe bet to skip the needle in my spinal column especially because the LP could be negative and I could still have MS.

[Westgrl]

My neuro dxed me based on MRI only. He said it was enough proof without the LP. I have read info online that this is possible as well. They feel there is no need putting you through that if it's not needed.

I was also told that the results of the LP aren't 100% either. Even if it doesn't show signs of MS, it doesn't mean you don't have it.

I would be more concerned with other testing. Did your doctor test you for other diseases like Lyme, etc? My neuro ran several blood tests to eliminate other disorders & diseases. MS isn't just about what we do see but about eliminating other possibilities. If he didn't test for anything else, then I would be concerned.

[alliesmommy]

I had a spinal tap but it was negative. I was dx based upon my sx and a number of MRIs. My neuro told me that just because a spinal tap is negative doesn't mean you don't have MS.

Honestly, I wouldn't go looking for a LP if you don't have to. It's not the most pleasant experience. MS has to be dx based upon certain criteria. Drs can't just dx MS willy hilly so I don't think you should get the spinal unless you wan to but even if is negative, you will still be dx with MS so why open up that can of worms?

[penkalet]

I completely agree with Lemstar saying:

"I am curious about starting with Tysabri though....is your neuro an MS specialist? I would be more concerned about that than about an MRI."

May be, ask for a second opinion.!?

Alain